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Old 19th Nov 2012, 01:21   #1
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I hope you never end up here...

I'm writing this from the PICU at Children's Hospital in Birmingham, Alabama, one of the best hydrocephalus and general pediatric neurology/neurosurgery centers in America (and possibly the world.) We've been here for over a week now with my son, who spontaneously stopped breathing last Saturday morning. His heart stopped for roughly an hour and fifteen minutes, which is bloody damn forever, if you're counting. When we got here, the diagnosis was hypernatremic dehydration, most likely ending in a seizure to get him to stop breathing. He had been examined by two doctors two days before. Neither felt that he had any signs then. He was on two diuretics, and while you could point the finger at them, honestly they were there because he had had issues with not getting rid of water and it affecting his lungs. His cessation of breath seems to be a fated thing, almost.

He has since that day begun to spontaneously breathe on his own accord (though it's still only agonal breaths, nothing life sustaining), he opens and closes his eyes, and he seems to response slightly to my wife and I and Youtube videos of Bump In The Night, a mid-90s claymation series heavy on actual music about the monster under the bed (yes, I cut that off at the past-he thought I caught him and gave him to him as a pet.) It's as though he's in there somewhere, trying to get back to where he was.

Before this, however, we gathered everyone in to see him one last time, we held a christening for him, as he'd been too sick to go to church (and that was really for us, not him) and we'd been told by his doctors to just let him go. Which is where I hope you never end up. Welcome to hell, population us.

So I want to ask you all a hard question, and it's one I feel has no answer, and I'm not trying to teach a lesson with. What is the soul, and where is it hiding? Why do some have to be forced from the body, and some fly away no matter what you do to save its cage? And why can we not know when one is trapped and can't get away? I think I've now seen the worst the world has to offer a person. If I'm perfectly honest, after seeing this I don't want any part of this world any more. In my case, it won't be too much longer if God is kind. Some of us continue to function well after we should be dead-but let me tell you, that's no life. I can spend days or weeks barely able to sit up after doing something like one good day of working on a case now-it's no rule, but it's certainly happened.

Before anyone asks, I am NOT running a poll on life support or no either for myself or my son. My wife has my wishes, and as long as my son continues to fight we will fight with him. Your responses will not weigh into our decisions. So don't respond as though there's a life on the line. This is more to keep my brain somewhat firing through the worst time in my life.

What is a soul? Does it have weight? What color is it? Can I point to it on an anatomy diagram? What does it look like? I bet I sound inane to some of you, but once you're here, these questions will keep you up at night as you throw up your meds because you cannot understand why those who have the least have it taken from them too. I don't know there's anything that could make this better, but at least a philosophical discussion can help me distract myself for a while.
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Old 19th Nov 2012, 03:47   #2
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For all the problems I've had and am likely to ever have, all the decisions I've made, and the ones others make that I disagree with... I'll come back here, even if only for one last appearance, for this. I checked the forums out of reflex after looking at the front page (no idea why I did it) and saw your post title, Kayin.

The soul, in as much as I can imagine it, is the essence of life. It travels in all the nerves, through the blood, expands and contracts with muscles... and so on. We always talk about things being "greater than the sum of their parts" - I don't believe a better description fits for the soul.

I can't answer the whys and wherefores of your question, nor can I even begin to sympathise with what must be a crushing situation. All I can do is wish really hard for your happiness. It's all I'm able to give, but I give it without hesitation. God speed, buddy.

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Old 19th Nov 2012, 04:35   #3
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You have my deepest respect, Kayin. I know it sounds trite, but I want you to know that I feel for you. I hope that you will be able to find some peace soon, and if I've learned anything about you over the years, I know that you're probably more prepared to deal with this than just about any person I know - if anyone can truly be prepared to face these kinds of life events. The experiences you personally have faced have given you a very unique window with which to view the world, and the resulting worldview would be enlightening if any of us had the chance to take a look.

Although I'm no longer religious, I'd like to offer an answer to your first question - from a non-religious point of view. As I mentioned, your experiences have shaped your worldview. Perhaps this is the soul - the experiences we face and the effects they have as we share them with others. It's the legacy we leave behind as our actions influence those around us. I can honestly say that you've inspired me in subtle ways. On days when I feel lazy and can't seem to summon the desire to work in the garage, I consider how it must feel to actually want to work but can't due to physical limitations. I take the stairs a lot more than I used to because it feels good to use my legs while they work, and you play a small role in that.

I'm sure others will come up with far better answers. No, it's not something you can point to. It doesn't have color or shape; rather, it's something intangible that shapes those around us.

Keep finding those motes of light in the world, Kayin. They're not just lighting your path, but through you they're providing light for others as well.
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Old 19th Nov 2012, 12:02   #4
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I was thinking that I hadn't seen you post recently, and now we know and it fills me with sadness.

I'm sorry you're in this hell and words rarely find meaning.
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Old 19th Nov 2012, 16:28   #5
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You again have my most deep respects Kayin. When I feel too lazy to do something, I really should think of you, and the extent to which you fight, you're one hell of an example to a lot of us.

When I was young, I always thought the soul was my right bicep, and to this day, I'm not sure why. I still can't figure that out. Perhaps the soul is just carpe diem for the outer conscience of the mind- an influence in making a choice and the consequences that go with it. I'm the last person to know...
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Old 19th Nov 2012, 17:50   #6
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I really can't imagine how hard times you are going through and I do hope the best for both you and your family.

It is times like these where I actually envy religious people as it must at least give some comfort to know that you are destined for a better place. As is however I personally do not believe in a soul, we are this body and when it is gone it is really just that, gone, no better place, no eternal life and no reunion with those you loved. This simply makes it that much sadder when you hear of someone whose life is being cut short, a child never given a proper chance to live, or someone whom deserves nothing but the best being given nothing but pain and suffering. There is really nothing to say in times like this as no words can change what is, and no expressions can ease the pain we feel.

We often fear our own death however it will always be the death of those we love that hurt us the most, but remember that all who leave us also leave a small dent in this world, for good or for bad, and that this small dent will help the next generation live a better life and lead to a brighter future.
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Old 19th Nov 2012, 19:08   #7
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Quote:
Originally Posted by KayinBlack View Post
So I want to ask you all a hard question, and it's one I feel has no answer....
I think you have it right there. There is really no answer. The soul has no weight, no place on the anatomical chart, no way to quantify it, test it or prove its existence. That's because the soul is not something of science, but rather of faith. While still in this mortal realm we can't know for certain whether or not the soul exists. But we can have faith that it does.

I believe that the only thing we can say about the soul is that it is the essential essence of us; that something that transcends the physical form and lives on after. Beyond that, the rest is just window-dressing we humans put on it in an attempt to understand something beyond our comprehension.

I spent a lot of time trying to find words to put this post that might bring some comfort. In the end I have come to the conclusion that anything I might say will be trite in comparison to what you're experiencing right now. So instead I'll just say this: Please know that through Bit-Tech you now have people the world over that are thinking of you in this dark hour. Our thoughts and prayers will be with you in the days ahead.
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Old 19th Nov 2012, 20:46   #8
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What is a soul? Does it have weight? What color is it? Can I point to it on an anatomy diagram? What does it look like? I bet I sound inane to some of you, but once you're here, these questions will keep you up at night as you throw up your meds because you cannot understand why those who have the least have it taken from them too. I don't know there's anything that could make this better, but at least a philosophical discussion can help me distract myself for a while.
Tricky.

Neal Stephenson pitched an interesting idea in his book Anathem. It goes a bit like this:

In order to survive in the world. we all have a representation/simulation of the world in our head, which allows us to understand and predict (and possibly influence) it. Nothing new there. But it also allows us to run hypothetical scenarios in our mind of what would happen if... We can anticipate different possibilities, different outcomes; different ways particular scenarios may play out. We therefore basically (can) have many parallel universes inside our head, branching off and converging as different probabilities become actualities or not. This is quite a load on the brain... or is it?

Enter quantum physics. A particle is at the same time there and not there until it is observed or acted upon, at which point its probability waveform collapses and reality settles on either one or the other. The parallel universe model goes further: the particle is both there in one universe, and not there in another, parallel universe. The probablility waveform collapsing merely separates the two universes which until then existed in a state of superposition: they branch, if you will.

The idea of parallel universes suggests that therefore our brains do not have to hold on to many parallel represented/simulated universes; it just has to be able to access those parallel simulations held in the brains of other, parallel you's living in parallel universes. Basically, through quantum physical processes in your neurons, your brain functions are inextricably linked with the brain functions of the many parallel you's living in their own corresponding universes. You're the sum of many parallel consciousnesses, living many parallel existences, all at the same time.

This has interesing implications. What if one of you dies? Without giving too much away of the plot, Neal Stephenson toys with the idea that you never do, really --from your point of view. You just kinda skip to a parallel universe/existence, where you didn't die; you got lucky, had a close shave, or made a miraculous recovery. There are of course parallel versions of your friends and loved ones there, who like you are the sum of many parallel consciousnesses, so in a way they are still with you (in the universe where you died, they are grieving; In this one they are relieved, and thinking about what it would have been like if you hadn't survived... thus accessing the consciousnesses of their parallel selves in that world).

The soul then, is this sum-total of consciousnesses, living all possible existences in all possible universes, all at the same time. It is above and beyond matter and physics in a way that waveform probabilities are.

OK, what I realise I am saying, in a rather long-winded way, is: the soul is quantum. Er.

I hope this idea gives you some interesting distraction. Know that halfway around the world, in another Birmingham, someone is thinking of you.
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Old 20th Nov 2012, 15:59   #9
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This has interesing implications. What if one of you dies? Without giving too much away of the plot, Neal Stephenson toys with the idea that you never do, really --from your point of view. You just kinda skip to a parallel universe/existence, where you didn't die; you got lucky, had a close shave, or made a miraculous recovery.
Whilst I do think it interesting, it doesn't seem complete.

How do you account for someone with a long term illness within these parallel existences? If I die after a long drawn-out terminal illness, at which point do I skip back to in another universe? The moment before death, or an earlier point i.e. before contracting the illness? If the latter, then the existence isn't parallel.

A miraculous recovery seems like an attempt to cover that base, but has anyone ever recovered from ALS or other seriously degenerative diseases?

As your life progresses, the number of alternates would eventually whittle down to one - how would that tally with the alternative existences of your friends and family?

I don't expect you to have the answers - I'm just pouring out the thoughts as they come to mind.


[edit] I also just realised that this is something of a thread-jack. Apologies to the OP, it was in no way meant to sideline you or your situation.

In fact - I'll ask the questions in another thread. Again, my apologies.
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Old 20th Nov 2012, 17:48   #10
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No worries, Spreadie. As Kayin says:

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...I don't know there's anything that could make this better, but at least a philosophical discussion can help me distract myself for a while.
I think this kind of 'thread derail' is exactly what he is asking for.
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Old 20th Nov 2012, 23:28   #11
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My condolences to you and your wife. No parent should have to go through this.

On the matter of the soul, I suppose it's where you believe it is. It's not a physical, touchable object, in much the same way a personality is. But, if you believe in it, it's as real as a personality. I suppose you could describe it as the essence of what makes someone who they are, what separates someone from the inanimate objects that surround us.

I suppose we'll never be sure if it leaves when it is time, or if it stays. This I suppose depends on what you believe. But if it is part of what makes this body human, then it's the part that makes someone unique, the part that can never be replicated. The spirit and soul, it could be suggested, are interwoven with each other and are what defines you, me and everyone else.

I suppose it boils down to what you believe and how you feel. It's a deeply personal thing, and something you have to decide individually. Equally, it's something that you shouldn't really force on anyone else.

Maybe it's just something that the ancients came up to understand what they couldn't explain. Maybe it's something that never has existed, and maybe we're wrong to dismiss it as a figment of the imagination....

Hope this helps you to some sort of conclusion

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Old 21st Nov 2012, 00:10   #12
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You know where I stand Kayin - it's not so much what the soul is or where it is, but the context in which it exists. The soul is the person, and it's hiding - living - in a broken world. I don't think we can separate the biological from the spiritual, even though only the former can be verified.
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Old 21st Nov 2012, 00:25   #13
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We had another extremely close call earlier today. It was so close, in fact, that they gave him fentanyl so they could let us hold him for the last time, until we noticed that his blood pressure, O2 sat and heart rate had returned to something very closely resembling normal. Currently, he's back in his hospital bed with Bump in the Night playing on Youtube and his stuffed Mr. Bumpy in his arms.. Sure he's on dopamine and epinephrine, but they're small maintenance doses to help his body get through the infection he's apparently picked up. We were doing so well too-getting his tracheostomy and g-tube surgeries set up and talking to the home ventilator people.

I have a very deep-seated belief that if God wants you, He will get you. I don't see this as playing God in any sense-if God didn't want us to figure out medicine, I don't think he would have made us user serviceable. I tell the people that have worked on him thank you many times a day, and I express thankfulness to God that they're available to help him.

Sometimes, I feel like the body is a prison for the soul, not a vehicle for it. If I'm fair about that, it's because I have suffered so much in my life and I've seen others suffer so much. Even at its worst today, I could not turn away-I was there for the ride, whatever happened. I couldn't sleep with myself if I left him when he needed me most.

If you have kids, go home and hold them, and be thankful you can. Holding Snort today took two painkillers and a few draws on my albuterol rescue inhaler. Didn't care. Holding him was far more important than my ability to breathe or the pain I felt. Especially as it was supposed to be holding him as he died. However, he has decided that he's gonna troll the PICU pretty regularly. Son, we are not impress.
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Old 21st Nov 2012, 00:59   #14
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However, he has decided that he's gonna troll the PICU pretty regularly. Son, we are not impress.
We have a saying here in Denmark that weeds perishes not so easily

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You know where I stand Kayin - it's not so much what the soul is or where it is, but the context in which it exists. The soul is the person, and it's hiding - living - in a broken world. I don't think we can separate the biological from the spiritual, even though only the former can be verified.
One think you can say that for those who believe in its existence it really does exist, and despite that I do not believe in it, it does truly exist in the minds of the believer. Much like phantom pains, they cannot be observed but that does not mean that the pain is any less real. So you can say that even for those of us that do not believe in its existence is still exists. (am I making any sense ?)
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Old 21st Nov 2012, 01:33   #15
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On the quantum note, I'm suddenly reminded of a thought I once had regarding the déjà vu phenomenon. It was based on the idea that the universe expands and contracts ad infinitum. That is, it has forever been exploding in a big bang, expanding to the point of collapse, imploding, then re-exploding.

This time around, while I'm walking down the street, I suddenly get the sense this exact moment has happened before. I shrug it off as just another random firing of my neurons. The thing is, it has all happened before. It's happened over and over and over again, and it will continue to happen forever. Today, when I had that moment of déjà vu, I was picking up a stray memory of one of my previous existences. Now, I wonder if I always get the same moment of deja vu, or if the memories are random each time?
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Old 21st Nov 2012, 06:33   #16
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First of all, let me say, I hope for the best for you and your family Kayin. Whatever the best may be, I do not know, but I wish it all the same.

Now about the soul. The soul I think is the extension of a singularity. It's what connects our physical self, our tangible self to the web beyond that. Transcending time and space I suppose. (It's all Heidegger's fault) The soul then, would be a sort of conduit, that would travel from vessel to vessel. Of course this raises up questions, like how many are there? Are the finite? Infinite?

To that I would say there might just be one soul. One thing. Everything might just be one object that moves and does not, it exists and does not, it is in an infinite state of just simply being, whether or not that "thing" exists or not does not matter, it is. What would this entail? That there is no "soul" per se. Just interactions, everything is connected, everything that is done, reverberates into another. Actions are an endless chain of reactions creating and destroying. It's all weird.

What am I saying then? That perhaps, there is not really a soul, or even anything at all. Perhaps everything is here and not here, it defies any notion. We could be alive doing something here and dead in another instance, but the larger picture is: what does it matter? The continual flux of states means one thing, that we are but matter. And the soul perhaps is just matter, unseen, but matter nonetheless. And it too can change states.

After all, at the core, are we all not just matter that exists at a certain point in time and space?

I kind of got off topic, but I don't think I answered what the soul is, instead I proposed that the soul, like us exist in a singularity, where existence is immaterial our conception things is only based on a limited point of view where in reality, everything is everything and yet nothing.

I just realized, I probably sound really high, but explaining the idea of a singularity in the context of a soul is akin to ploughing a field with a toothpick.
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Old 21st Nov 2012, 09:57   #17
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Quote:
Originally Posted by KayinBlack
If you have kids, go home and hold them, and be thankful you can.
This.

Quote:
Originally Posted by lp1988
One think you can say that for those who believe in its existence it really does exist, and despite that I do not believe in it, it does truly exist in the minds of the believer.
I get what you're saying, but to say that something exists only in the mind is effectively saying that it doesn't really exist - ergo, it's possible to perceive almost anything, and whilst the perception exists cognitively, the perceived entity doesn't actually exist. I don't consider spirituality like that at all... I believe it exists in actuality, independently of perception.
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Old 21st Nov 2012, 12:59   #18
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All the memories one imparts on others is the entirety of the soul. My dad passed away almost a year ago. And I don't think his soul "went" anywhere. It exists. In the memories of all those left behind. Good or bad.

Let me just say that I don't necessarily think a soul has to directly relate to an "afterlife" either. Because I'm not so sure I believe in an afterlife.

edit: Stay strong KayinBlack. Much respect.
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Old 21st Nov 2012, 17:46   #19
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Sounds like you've got a fighter there!
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Old 21st Nov 2012, 22:02   #20
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I really feel for you there. Through I have two young children I still can't imagine quite what you're going through, but from you posts you're being grated a bit of clarity amid the trauma. You are all in my thoughts.
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